Am I attached? A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada.

BACKGROUND: Having a primary care provider is associated with better care experiences and lower care costs. In 2021, INSPIRE-PHC released Primary Care Data Reports - publicly available summaries of administrative billing data about how populations in each of Ontario's 60 health teams use primary care services. Given the characterization of Canadian primary care systems as 'in crisis', publicly available data about primary care at the regional level presented a significant opportunity for knowledge mobilization. An understandable resource could ground the public conversation about primary care access in data. Recognizing the role that lived experience plays in ensuring the public understands research findings, a partnership between patient advisors, Ontario Health Team representatives, researchers, and trainees was established to co-produce public-facing infographics based on primary care data. METHODS: Evidence-based guidelines for public health infographic creation and elements of transformative action research guided a six-meeting process to engage up to 14 patient advisors, three Ontario Health Team staff and two primary care trainees. Patient advisors were affiliated with a provincial patient-oriented primary health care research group or a Hamilton-based Ontario Health Team. Ninety-minute meetings were conducted virtually, and notes were shared with attendees to ensure they accurately reflected the conversation. Two consultations with Ontario Health Team-affiliated primary care providers provided direction and ensured project outputs aligned with local priorities. RESULTS: Project partners shared feedback on draft infographics, audience identification, priority elements from Primary Care Data Reports to include in the infographics, and aesthetic features (e.g., headings, colour scheme, charts). Project partners felt the most important metrics to convey to the public were those that simultaneously reinforced the benefits of primary care on individual health outcomes and health system costs. CONCLUSIONS: Patient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Our approach to engaging patients prevented both oversimplification and unnecessary complexity in a public-facing visual about attachment to primary care.

Primary care is the first point of contact for patients accessing the health care system. Primary care providers (i.e., family doctors and nurse practitioners ­ working individually or in teams of nurses, dieticians, pharmacists, social workers and others) ­ help patients and families manage health concerns over time by working to prevent, diagnose, and treat illnesses and link patients with specialist care when needed. Having a primary care provider is associated with better healthcare experiences and lower costs of care. In 2021, the Primary Care Data Reports were released to the public. The reports contain administrative data about how patients engage with primary care in each of the 58 Ontario Health Teams. Patient advisors, Ontario Health Team representatives, researchers, and trainees created an infographic to share this data in a way that can be understood by everyone. Infographics use images to help people process information faster, which can make health-related topics easier to understand. By understanding the value of primary care, people can participate in conversations about how to ensure primary care is accessible to everyone. Engaging patients is becoming common in research, but collaborating with patient advisors and health system partners to create visual summaries is less common. We had six virtual meetings that were 90 min each with up to 14 patient advisors, Ontario Health Team representatives, researchers and trainees. Patient advisors helped decide who the audience would be, which information from the Primary Care Data Reports to include, and how the infographic would look. Patient advisors felt it was most important to highlight the benefits patients can get from primary care, and the impact primary care can have to reduce health system costs. We consulted with primary care clinicians to ensure the infographic reflected local priorities. Working with patient advisors and Ontario Health Team representatives helped to create an infographic about Primary Care Data Reports data that is easy to understand by the public.

Understanding one health challenges in marginalized urban settings: A patient and public involvement (PPI) approach from the CHIP consortium activities across four global cities.

Background: Slum communities face health risks influenced by environmental, human, and animal health factors, particularly antimicrobial resistance (AMR). Tailored, community-driven solutions are needed to address these multifactorial health determinants. This study explores One Health challenges in urban slums using a Patient and Public Involvement (PPI) approach. Objectives: This study aims to use qualitative methods within a PPI framework to examine the social, environmental, and animal health factors contributing to AMR and other health challenges in urban slums. Focusing on One Health, we engaged slum residents in Jaipur, Jakarta, Antofagasta, and Istanbul through participatory approaches like social mapping and transect walks to identify health risks and develop intervention strategies. Methods: A PPI approach was employed to involve communities in the research process, ensuring culturally relevant insights. Data collection included social mapping, transect walks, and key informant interviews in the four cities, highlighting critical health determinants such as environmental contamination, healthcare access, and animal-related risks. Thematic analysis identified common challenges and intervention opportunities within the One Health framework. Conclusion: The study underscores the importance of PPI in addressing One Health challenges in urban slums and reveals interconnected human, environmental, and animal health risks. Engaging communities fostered trust and provided locally relevant solutions to complex health issues like AMR. Future interventions should be co-designed with communities to address social determinants like sanitation and healthcare access for sustainable outcomes.

Clinical translation of tissue-engineered oesophageal grafts: are patients ready for us?

PURPOSE: We sought to engage with expert patient/carers to understand attitudes towards use of tissue engineering (TE) for long-gap oesophageal atresia (OA). METHODS: An in-person engagement event for 70 patients/parents was held by the OA patient group, TOFS. Attitudes towards TE were assessed before and after a talk on use of TE oesophagi in a pre-clinical OA model. Perceptions were assessed using a 5-point Likert scale (median [range]) and compared using Mann-Whitney test. RESULTS: 43 attendees responded; 56% parents/caregivers, 21% patients, 7% healthcare workers, 16% unreported. Most (85%) had some awareness of TE but for 15%, it was a new concept. Attendees were receptive to TE; 89% reported no concerns about growth of their/child(s) cells in a lab and 61% reported no concerns about using animal products. Perceptions of TE significantly improved after the presentation from 4 (2-5, n = 32) to 5 (3-5, n = 28) p < 0.0001, and 96% would like to be involved in focus groups on development of a TE product for use in OA. CONCLUSION: Input from key stakeholders is essential to introduction of TE constructs clinically. The overall response to TE constructs was positive, and informs development of an OA-specific focus group to guide translation.

Patient and public involvement and engagement: Do we need an 'ethical anchor'?

BACKGROUND: Working alongside patients and the public to shape and engage with research, Patient and Public Involvement and Engagement (PPIE), facilitates more impactful research outcomes. The UK Standards for Public Involvement provides a framework for conducting PPIE; however, they do not refer directly to ethical conduct. Research ethics involve the moral principles that govern researchers' actions, and securing ethical approval from a research ethics committee is necessary before starting a study. Nonetheless, in the UK, ethical approval is not needed for PPIE activities. MAIN TEXT: By its very nature, PPIE requires interaction with patients and public about their lived/living experience of often sensitive and emotional topics. We need to consider ethical principles of PPIE, and potential for harm to those involved. The authors call for ethics guidance to be included in the UK Standards for Public Involvement and discuss this with regards to (a) emotional risk (b) physical risk (c) confidentiality and personal data (d) support versus paternalism (e) marginalisation and (f) building and maintaining healthy relationships. CONCLUSION: The argument presented here has been informed by the authors' own experiences in topic areas ranging from transplantation, respiratory disease and health inequalities to women living with domestic abuse, and suggests that although requiring ethical approval for PPIE would be a step too far, and stifle research progress, PPIE needs to be conducted with an 'ethical anchor' to facilitate ethical practice and mitigate risk.

Patient and Public Involvement and Engagement (PPIE) is key to achieving more meaningful and effective research results. While the UK Standards for Public Involvement offer valuable direction for PPIE activities, they currently lack specific guidance on ethical conduct. Research ethics are fundamental moral principles that researchers follow to ensure the safety and well-being of individuals involved in their studies. These principles are overseen by research ethics committees (REC). In the UK, obtaining REC approval is not mandatory for PPIE activities. However, given that PPIE often involves sensitive and emotional discussions with patients and the public, ethical considerations are paramount. While REC oversight could ensure ethical practices, it might also introduce delays, consume resources, and deter researchers from engaging with the public. Instead, the authors propose enhancing the UK Standards for Public Involvement by incorporating ethics guidance tailored to emotional and physical risks, confidentiality, maintaining a balance between support and control, preventing marginalisation, and building and maintaining healthy relationships.

Building research capacity and capability to enhance the quality of living and dying addressing advancing frailty through integrated care: the ALLIANCE partnership.

Background: Frailty affects around 10% of people aged over 65 years, increasing to 65% of those over 90 years. This number is increasing. Older people with frailty are projected to become the largest future users of care services as they near end of life. Living with frailty increases vulnerability to sudden deterioration, fluctuating capacity and mortality risk. This leads to complex needs, requiring integrated care, and an approach orientated towards living with, as well as dying from, advancing frailty. However, accessing care in a timely manner can be difficult. Aims: To develop a sustainable, cross-sectoral partnership to: identify priorities to improve integrated care delivery, and care transitions, for older people with advancing frailty develop organisations in which to conduct research submit study proposal(s) for funding. Objectives: To establish Partnership infrastructure and identify key contacts across palliative and end-of-life care. To understand the strengths, weaknesses, barriers and enablers of research readiness and clinical services for people with advancing frailty. To support provider services to become research ready. To establish Partnership-wide research questions and develop research proposals. Activities: The Partnership brought together experts, by profession or experience (n = 244), across specialist palliative and geriatric care and local government, to improve the delivery of integrated care for older people with advancing frailty as they near end of life. Members included older people with frailty, unpaid carers, health, social and voluntary care professionals and academics, across the East Midlands, South East England and South West London. A survey of key contacts (n = 76) mapped and scoped the Partnership's strengths, weaknesses, barriers and enablers of services for people with advancing frailty, and service providers' research readiness. Forty-six key contacts responded. Most worked in the East Midlands (59%), in health care (70%) and in the community (58%). Survey findings were used to develop a service framework and to create a short list of potential research questions. Questions were refined and prioritised through coproduction with frail older people (n = 21), unpaid carer representatives (n = 7), health, social and voluntary care professionals (n = 11) and care home representatives (n = 3). The question chosen for bid development focused on ensuring what matters most to older people with frailty informs service development. This bid is currently being written. Partnership members were also supported to develop research readiness and enhance meaningful patient and public involvement by the development and curation of multiple resources. Reflections: This work was challenging. The Partnership enabled the collaboration of diverse stakeholders and fostered opportunities to improve end-of-life care for older people with advancing frailty. However, the fluidity of the workforce, lack of finance to buy-out key contacts' time, limited service integration across sectors, lack of common language and concepts across sectors, need to build research understanding and readiness, and minimal evidence of engaging frail older people approaching end of life in determining service provision and research, made achieving the initial goals overly ambitious. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty, and is currently coproducing a clinically applied, translational research proposal. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135262.

Older people living with frailty are at risk of ill health, disability, admission to hospital or long-term care, and of dying. Living with frailty means having multiple care needs that require the support of multiple providers and sectors. Care can be patchy, leaving families to provide and coordinate care, and quality of life for older people in their final years can be poor. Little research has studied how best to support older people with frailty as they near end of life, particularly as they move between care providers and sectors. Our Partnership brought together experts, by profession or experience, who were interested in improving this care in three English regions, the East Midlands, the South East and South West London. We identified 76 key contacts from service providers, voluntary care and unpaid carer representatives who had knowledge, interest and access to other interested individuals in their region. We conducted a survey to understand current services and research expertise. Forty-six key contacts completed the survey. Survey findings were used to develop a service framework for older people living and dying with frailty and create a short list of potential research questions which were then refined and prioritised. The research question chosen for bid development focuses on ensuring what matters most to older people with frailty informs service development. The Partnership highlighted that despite accepting the importance of care coordination, there remain serious challenges in improving services, and promoting research capacity. These challenges included few services engaging older people to support service development, services rarely working together across sectors, lack of a common language throughout sectors, a rapidly changing workforce and the need for funding to support collaborators across all sectors. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty and is coproducing a research proposal.

Centering Racial Health Equity in Systematic Reviews Paper 6: Engaging racially and ethnically diverse stakeholders in evidence syntheses.

OBJECTIVE: To inform methods for centering racial health equity in syntheses, we explored 1) how syntheses that assess health-related interventions and explicitly address racial health inequities have engaged interest holders and 2) guidance for engaging racially and ethnically diverse interest holders. STUDY DESIGN AND SETTING: We systematically identified evidence syntheses (searches limited to January 1, 2020, through January 25, 2023) and guidance documents (no search date limits) for this overview. From syntheses we extracted data on engagement rationale and processes and extracted approaches suggested from guidance documents. We summarized findings qualitatively. RESULTS: Twenty-nine of the 157 (18%) eligible syntheses reported using engagement. Syntheses typically lacked robust detail on why and how to use and structure engagement and outcomes/effects of engagement, though syntheses involving Indigenous populations typically included more detail. When reported, engagement typically occurred in early and later synthesis phases. We did not identify guidance documents that specifically intended to provide guidance for engaging racially/ethnically diverse individuals in syntheses; some related guidance described broader equity considerations or engagement in general. CONCLUSION: This review highlights gaps in understanding of the use of engagement in racial health equity-focused syntheses and in guidance specifically addressing engaging racially and ethnically diverse populations. Syntheses and guidance materials we identified reported limited data addressing the whys, hows, and whats (i.e., rationale for, approaches to, resources needed and effects of) of engagement, and we lack information for understanding whether engagement makes a difference to the conduct and findings of syntheses and when and how engagement of specific populations may contribute to centering racial health equity. A more informed understanding of these issues, facilitated by prospective and retrospective descriptions of engagement of diverse interest holders, may help advance actionable guidance and reviews.

Credit where it's due: Recognising lived experience in research authorship.

OBJECTIVE: To identify current practice and preferences about whether and how to acknowledge authors' lived experience when authors contribute their lived experience expertise to research outputs in the context of health and healthcare. METHODS: Surveys to people with lived experience and to academic researchers who had conducted research together (via consultation, partnership or lived-experience-led). RESULTS: Responses from 40 academic researchers and 36 lived experience contributors were included. Most respondents (n = 23 lived experience, 63.9 %; n = 28 academic, 70 %) reported an author's lived experience should be publicly recognised. Approximately half recommended that affiliations should highlight authors' lived experiences (n = 24 lived experience, 66.7 %; n = 19 academic, 47.5 %). When people with lived experience had co-authored outputs, their lived experience was not always acknowledged (n = 13/20, 65 % lived experience; n = 17/32 academic, 53.1 %). CONCLUSION: Most respondents reported that a person's lived experience should be recognised on health-related research outputs, but this did not consistently occur in practice. PRACTICE IMPLICATIONS: Teams planning health-related research outputs should seek input from relevant authors about their preferred practices and terms for recognising their lived experience. Unless preferred otherwise, we recommend that the lived experiences of relevant authors are acknowledged within the output and that lived experiences are presented in affiliations.

Patient and Public Involvement in Research Evaluating Integrated Care for People Experiencing Homelessness: Findings From the PHOENIx Community Pharmacy Pilot Randomised-Controlled Trial.

INTRODUCTION: There is a paucity of research on and a limited understanding of patient and public involvement (PPI) in the context of research in homelessness and, in particular, direct involvement of people with lived and living experience of homelessness (PEH) as expert advisors. We aim to report on outcomes and reflections from lived experience advisory panel (LEAP) meetings and PPI activities, held throughout the study lifecycle of a pilot randomised-controlled trial (RCT) focused on evaluating integrated health and practical support for PEH. METHODS: Community Pharmacy Homeless Outreach Engagement Non-medical Independent prescribing Rx (PHOENIx Community Pharmacy RCT) is an integrated health and social care intervention for people experiencing homelessness who present to community pharmacy. Intervention includes weekly support from a pharmacist prescriber and a third sector support worker for up to 6 months. PPI activities undertaken throughout the study were documented, including outcomes of LEAP meetings. Outcome reporting followed Guidance for Reporting Involvement of Patients and the Public 2 Short Form (GRIPP2-SF). RESULTS: In total, 17 members were recruited into the LEAP; six meetings (three in two study sites) were held. PPI input was also received through representation from homelessness third sector organisation staff as study co-applicants and core membership in the trial steering committee. Together, the PPI activities helped shape the study proposal, design of study materials, data analysis and dissemination materials. LEAP panel members offered valuable input via their experience and expertise into the delivery and refinement of interventions. Although longitudinal input was received from some LEAP members, ensuring repeat attendance in the pre-planned meetings was challenging. CONCLUSION: People who face social exclusion and marginalisation can provide highly valuable input as equal partners in co-design and delivery of interventions seeking to improve their health and well-being. Fluid membership and flexible methods of seeking and incorporating advice can offer pragmatic approaches to minimising barriers to continued involvement in research. PATIENT OR PUBLIC CONTRIBUTION: This study reports findings and learning relevant to involvement of people with lived and living experience of homelessness as advisors in a research study. It is important for researchers to offer fluid memberships and use diverse methods to receive input from lived experience members, as traditional PPI methodology may be insufficient to ensure inclusivity. Staff and volunteers from third sector organisations were important PPI partners who bring their experience based on frontline service provision, often as the first port of call for people experiencing severe and multiple disadvantage. TRIAL REGISTRATION: ISRCTN88146807.

Consequences of how third sector organisations are commissioned in the NHS and local authorities in England: a mixed-methods study.

Background: As a matter of policy, voluntary, community and social enterprises contribute substantially to the English health and care system. Few studies explain how the National Health Service and local authorities commission them, what outputs result, what contexts influence these outcomes and what differentiates this kind of commissioning. Objectives: To explain how voluntary, community and social enterprises are commissioned, the consequences, what barriers both parties face and what absorptive capacities they need. Design: Observational mixed-methods realist analysis: exploratory scoping, cross-sectional analysis of National Health Service Clinical Commissioning Group spending on voluntary, community and social enterprises, systematic comparison of case studies, action learning. Social prescribing, learning disability support and end-of-life care were tracers. Setting: Maximum-variety sample of six English local health and care economies, 2019-23. Participants: Commissioning staff; voluntary, community and social enterprise members. Interventions: None; observational study. Main outcome measures: How the consequences of commissioning compared with the original aims of the commissioners and the voluntary, community and social enterprises: predominantly qualitative (non-measurable) outcomes. Data sources: Data sources were: 189 interviews, 58 policy and position papers, 37 items of rapportage, 692,659 Clinical Commissioning Group invoices, 102 Freedom of Information enquiries, 131 survey responses, 18 local project group meetings, 4 national action learning set meetings. Data collected in England during 2019-23. Results: Two modes of commissioning operated in parallel. Commodified commissioning relied on creating a principal-agent relationship between commissioner and the voluntary, community and social enterprises, on formal competitive selection ('procurement') of providers. Collaborative commissioning relied on 'embedded' interorganisational relationships, mutual recognition of resource dependencies, a negotiated division of labour between organisations, and control through persuasion. Commissioners and voluntary, community and social enterprises often worked around the procurement regulations. Both modes were present everywhere but the balance depended inter alia on the number and size of voluntary, community and social enterprises in each locality, their past commissioning experience, the character of the tracer activity, and the level of deprivation and the geographic dispersal of the populations served. The COVID-19 pandemic produced a shift towards collaborative commissioning. Voluntary, community and social enterprises were not always funded at the full cost of their activity. Integrated Care System formation temporarily disrupted local co-commissioning networks but offered a longer-term prospect of greater voluntary, community and social enterprise influence on co-commissioning. To develop absorptive capacity, commissioners needed stronger managerial and communication capabilities, and voluntary, community and social enterprises needed greater capability to evidence what outcomes their proposals would deliver. Limitations: Published data quality limited the spending profile accuracy, which did not include local authority commissioning. Case studies did not cover London, and focused on three tracer activities. Absorptive capacity survey was not a random sample. Conclusions: The two modes of commissioning sometimes conflicted. Workarounds arose from organisations' embeddedness and collaboration, which the procurement regulations often disrupted. Commissioning activity at below its full cost appears unsustainable. Future work: Spending profiles of local authority commissioning; analysis of commissioning in London and of activities besides the present tracers. Analysis of absorptive capacity and its consequences, adjusting the concept for application to voluntary, community and social enterprises. Comparison with other health systems' commissioning of voluntary, community and social enterprises. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128107) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 39. See the NIHR Funding and Awards website for further award information.

National Health Service commissioners and local councils often buy health and care services from voluntary, community and social enterprises. This study aimed to explore how commissioners and voluntary, community and social enterprises worked together and where improvements could be made. We talked to commissioners and voluntary, community and social enterprises in six areas across England and focused on services for learning disabilities, social prescribing and end-of-life care. We analysed National Health Service financial accounts to see how much the National Health Service was spending on services provided by voluntary, community and social enterprises. We surveyed how commissioners and voluntary, community and social enterprises were using information and knowledge to make decisions. We organised events bringing together commissioners and voluntary, community and social enterprises to share knowledge and experience. We found there were two ways commissioners bought services from voluntary, community and social enterprises. One was commodified (a buying-and-selling model), the other collaborative (based on working together). Both were happening at the same time in all the areas of the study, but usually one of them was more present than the other. We saw a general move towards collaboration, but some areas were further along with this than others. Various things helped commissioners and voluntary, community and social enterprises collaborate, such as: paying voluntary, community and social enterprises enough for their services; having people and networks that encouraged others to work with voluntary, community and social enterprises; and including voluntary, community and social enterprises in making decisions about health and care. Commissioners and voluntary, community and social enterprises might therefore lean further towards working together to see how collaborative commissioning can be further developed; how to make contract prices cover voluntary, community and social enterprises' costs; how to enable longer-term contracts; and how to enable less hurried, more considered ways of renewing contracts (e.g. by putting draft contract specifications out to pre-tender consultation). The new Integrated Care Systems in local areas could encourage all this to happen, but pressures elsewhere in the health and care sector might make it more difficult.

Corrigendum: A critical reflection on using the Patient Engagement In Research Scale (PEIRS) to evaluate patient and family partners' engagement in dementia research.

[This corrects the article DOI: 10.3389/frdem.2024.1422820.].

Conducting Patient-Oriented Research in Pediatric Populations: A Narrative Review.

It has become increasingly common for researchers to partner with patients as members of the research team and collaborate to use their lived experiences to shape research priorities, interventions, dissemination, and more. The patient-oriented research (POR) model has been adopted by both adult and pediatric health researchers. This cultural change to conducting pediatric health research brings with it new methodologies, tools, challenges, and benefits. In this review, we aim to provide guidance on how to conduct POR for pediatric populations using examples from the literature. We describe considerations for engagement before the project begins, for engagement across the research cycle, and for measurement and evaluation. We aim to show that conducting POR is feasible, beneficial, and that many common challenges and barriers can be overcome with preparation and usage of specific tools.

The lived experience of co-production: Reflective accounts from the InCLUDE project.

BACKGROUND: The value of co-produced research in health and social care is increasingly recognised, but accounts into the processes and individual experiences of co-producing research are lacking. This paper describes the personal journeys of four researchers (two experts by foster caring experience and two experts by profession) throughout the life course of a co-produced research project exploring the barriers and facilitators to inclusive research in foster caring, the InCLUDE project. METHODS: Each researcher kept a diary throughout the InCLUDE project of their personal reflections, questions, and learning. These were synthesised and reviewed by the researchers and two colleagues external to the team, and key themes were extracted. RESULTS: Narratives constructed from the diaries are presented in relation to distinct aspects of the co-production journey, alongside illustrative quotes. These aspects include: motivations for starting the project; making sense of the project; defining roles and responsibilities; challenges; and reflections on acquired knowledge and skills. From these insights, the researchers present recommendations for others endeavouring to engage in co-produced research. These include: recognising vulnerabilities and challenges during the early stages of a project; creating safe spaces; seeing the value of diversity; harnessing individual strengths; establishing a strong routine; and ensuring equal voice. CONCLUSIONS: This paper presents a novel perspective on the realities of co-produced research by documenting the lived experiences of researchers within the context of foster care research. It highlights the importance of both measurable, tangible project outcomes, and the personal and skills growth of team members. The consistent use of diaries is encouraged as a valuable practice to capture learning, progress and achievements throughout the co-production process.

Four researchers (two experts by foster caring experience and two experts by profession) reflect on their journey of being part of the InCLUDE project. InCLUDE looked at how to make research with foster and kinship carers more inclusive. Each researcher kept a diary throughout the project, to help them capture their learning, thoughts and feelings. In this paper, the diaries are collated together into themes, with illustrative quotes. These themes include motivations to get involved in the project, settling into the role, challenges, personal development, and new knowledge. The researchers then share their key learning which can help others who are hoping to co-produce a research project. This includes the importance of talking about feeling vulnerable, creating safe spaces, working to your individual strengths, setting up a strong routine, and making sure that everyone has an equal voice and role on the project. The researchers also discuss the benefits of using diaries as a way to capture learning, experiences and progress, and encourage other research teams to do the same.

Health and wellbeing of survivors of sexual violence and abuse attending sexual assault referral centres in England: the MESARCH mixed-methods evaluation.

Background: One million people in England and Wales experience sexual violence and abuse each year, with nearly half experiencing serious sexual offences; around 30,000 survivors access sexual assault referral centres. Objectives: This research was commissioned by National Institute for Health and Care Research to evaluate access, interventions and care pathways for survivors, especially those provided through sexual assault referral centres. Design, setting, participants: The sexual assault referral centres care pathway was investigated through six sub-studies. There were two Cochrane Reviews (4274 participants). Seventy-two providers and 5 survivors were interviewed at eight sites; the children and young people study involved 12 participants from two sexual assault referral centres. A cohort study involving three-wave data collection over 1 year (21 sites; 2602 service users screened, 337 recruited) used a multilevel modelling framework to explore risk factors for burden of post-traumatic stress disorder symptoms at baseline and change at 1 year. We analysed costs and outcomes and conducted a narrative analysis (41 survivors). We worked closely with survivors and prioritised the safety/welfare of participants and researchers. Results: Cochrane Reviews identified large effects from psychosocial interventions for post-traumatic stress disorder and depression. Sexual assault referral centres delivered a high-quality frontline service for survivors but groups experiencing domestic abuse and some ethnic and cultural minorities were under-represented. The qualitative research emphasised inter-agency collaboration for survivor benefit. The cohort study identified a risk 'triad' of adverse childhood experiences, poor mental health and economic deprivation, which was associated with baseline trauma burden. There were important improvements in trauma symptoms a year later. These improvements were unrelated to different sexual assault referral centre models. Costs and other outcomes were also similar across models. Harmful policing and justice practices/procedures were identified by 25% of participants. In this context, trauma-competent interviewing techniques, regular/timely updates and conveying case decisions with care signalled good practice. Limitations: The cohort study lacked a comparison group, reducing confidence in the finding that access to sexual assault referral centres explained the reduction observed in post-traumatic stress disorder. Conclusions and future work: Barriers to access call for concerted efforts to implement trauma-informed universal health services. The risk 'triad' underscores the value of holistic approaches to care at sexual assault referral centres and timely follow-on care. Poor mental health was the main barrier to service access beyond sexual assault referral centres. The persistence of trauma symptoms a year after accessing sexual assault referral centres signals urgent need for tackling counselling wait-lists, expanding support options and commitment to lifelong care. Multidisciplinary evaluation of sexual assault referral centres for better health provides a foundation for advancing trauma-informed practices in the context of sexual violence and abuse. Study registration: This study is registered as ISRCTN30846825 https://doi.org/10.1186/ISRCTN30846825. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 16/117/04) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 35. See the NIHR Funding and Awards website for further award information.

Around 30,000 survivors of rape, sexual assault and sexual abuse access sexual assault referral centres in England each year. Sexual assault referral centres provide support, health care and, if people wish, can gather evidence for a criminal investigation. Sexual assault referral centres also open routes to other care/support. We intended to understand the benefits of sexual assault referral centres and ways to improve care. We interviewed 72 professionals to understand how they worked together. We followed up 335 survivors over 1 year after visiting a sexual assault referral centre. We gathered the views of 12 children and young people and 41 people from minority and disadvantaged backgrounds. We examined existing research to gather evidence of the benefit of care/support. We worked with survivors to confirm the safety and relevance of our research. Participants were positive about sexual assault referral centres and Independent Sexual Violence Advisors, reporting very low harms (1% viewed sexual assault referral centre services as harmful to them). They were also satisfied with charities offering counselling, helplines and advocacy (4% harms). The research gathered mixed feedback about the National Health Service and police, with more harm being reported (15% and 25%, respectively). We found gaps in NHS care for those with complex trauma and long-term mental health problems. Post-traumatic stress disorder affected 70% of participants, with the highest being observed for those with adverse childhood experiences, poor mental health and economic struggles (a risk 'triad'). Improvements occurred 1 year later, although half of participants still had trauma symptoms. We identified new treatments (e.g. yoga) as potential alternatives to traditional interventions. Sexual assault referral centres offer excellent care to survivors but should be accessible to a wider group of people. Identifying, supporting and careful referral of those with the risk triad mentioned may aid recovery after sexual violence and abuse. The research suggests that the NHS and policing/justice needs to ensure that they provide good care more often.

Protocol: Assessing the impact of interest-holder engagement on guideline development: A systematic review.

This is the protocol for a Campbell systematic review. The objectives are as follows. The objective of this review is to identify and synthesize empirical research on the impacts of interest-holder engagement on the guideline development process and content. Our research questions are as follows: (1) What are the empirical examples of impact on the process in health guideline development across any of the 18 steps of the GIN-McMaster checklist? (2) What are the empirical examples of impact on the content in health guideline development across any of the 18 steps of the GIN-McMaster checklist?

Inclusion of people with multiple long-term conditions in pregnancy research: patient, public and stakeholder involvement and engagement in a randomised controlled trial.

BACKGROUND: Both pregnant women and those with multiple long-term conditions are under-served groups in clinical research. Informing and improving research through patient and public involvement, including pregnant women with two or more long-term health conditions, is critical to increasing their inclusion in maternity research. Giant PANDA is a randomised controlled trial, evaluating the effect of a treatment initiation strategy with nifedipine versus labetalol on severe maternal hypertension and a composite outcome of fetal/neonatal death, or neonatal unit admission. We aimed to undertake a mixed methods study-within-a-project within the Giant PANDA trial to understand barriers and facilitators to participation, understand and optimise current representativeness of clinical trial delivery of those with multiple long-term conditions and co-create a checklist to support their inclusion in pregnancy research. METHODS: We undertook online workshops with women with lived experience and hybrid workshops with healthcare professionals who look after women with multiple long-term conditions. A site audit of Giant PANDA sites provided insights into research delivery capacity and health system set-up, and how this influences inclusion. An extension to the Giant PANDA screening log captured data on multiple long-term conditions enabling analysis of the impact of these health conditions on women's inclusion in the trial. We co-created a checklist of recommendations for those designing and recruiting to similar clinical trials. RESULTS: Five key recommendations were identified including a need to (1) involve women with multiple long-term conditions as partners in maternity research and (2) minimise barriers that stop them from taking part through (3) designing and delivering research that is flexible in time and place (4) consider research as part of care for everyone, including those with multiple long-term conditions and (5) measure and report inclusion of those with two or more health conditions in maternity research. Multiple long-term conditions were not a barrier to recruitment or randomisation in the Giant PANDA trial. CONCLUSION: Women with multiple long-term conditions would like opportunities to find out about and participate in research which accounts for their needs. Our checklist aims to support those designing and delivering maternity research to optimise inclusion of individuals with multiple-long term conditions. TRIAL REGISTRATION: Giant PANDA: EudraCT number: 2020-003410-12, ISRCTN: 12,792,616.

Pregnant women with two or more long-term health problems may be less likely to be included in research. Including them in research is important to ensure we give the best care. Giant PANDA is a study comparing two medicines (nifedipine or labetalol) to manage high blood pressure in pregnancy. As part of the study, we looked at the number of women with two or more long-term health conditions included. We talked to women with experience of two or more long-term health conditions in pregnancy, and healthcare staff who look after these women. Finally, we looked at how maternity research is set up in Giant PANDA study sites. We found that women with two or more health conditions were taking part in the Giant PANDA study. Women with two or more long-term conditions would like the choice to be included in research which considers their needs. This includes being involved in the planning and ongoing support for studies. Research needs to be part of routine care, flexible, and not time consuming to help those with two or more health conditions take part. Our findings have been used to make a checklist to help plan and support studies for women and birthing people with two or more long-term health conditions.

Co-Designing a Digital App to Support Young People's Patient and Public Involvement and Engagement (VoiceIn): Development and Usability Study.

Background: While patient and public involvement and engagement (PPIE) is now seen as a cornerstone of mental health research, young people's involvement in PPIE faces limitations. Work and school demands and more limited independence can make it challenging for young people to engage with PPIE. Lack of ability or desire to attend face-to-face meetings or group discussions can further compound this difficulty. The VoiceIn app and digital platform were codeveloped by a multidisciplinary team of young people, mental health researchers, and software designers, and enables young people to engage directly with PPIE opportunities via a mobile app. Objective: This paper aims to describe how VoiceIn was developed through a series of co-design workshops with relevant stakeholders, specifically (1) how the initial design of VoiceIn was informed and driven by focus groups with young people, mental health professionals, and PPIE leads; (2) how VoiceIn was refined through collaboration with the aforementioned stakeholders; (3) the priorities for an app to support PPIE; (4) the key features necessary in the PPIE app; and (5) the recommended next steps in testing and deploying the digital platform. Methods: Initial co-design workshops took place with young people, mental health professionals, and PPIE leads to identify key features of an app to support PPIE. A series of VoiceIn design prototypes were developed and iterated based on the priorities and preferences of the stakeholders. The MoSCoW (must have, should have, could have, won't have) prioritization method was used throughout the process to identify priorities across the different stakeholder groups. Results: Co-design with young people, mental health professionals, and PPIE leads supported the successful development and improvement of the VoiceIn app. As a result of this process, key features were identified, including allowing for various modes of providing feedback (eg, polls and comments), reviewing project updates, and expressing interest in categories of research. The researcher platform was developed to support multimedia uploads for project descriptions; a jargon detector; a dedicated section for providing project updates; and a visually appealing, user-friendly design. While all stakeholder groups emphasized the importance of allowing app users to engage with the app in various ways and for there to be ongoing progress updates, group differences were also noticed. Young people expressed a desire for incentives and rewards for engaging with the app (eg, to post on their public social media profiles), and mental health professionals and PPIE leads prioritized flexibility in describing the project and its PPIE needs. Conclusions: A co-design approach was pivotal to the development of the VoiceIn app. This collaborative approach enabled the app to meet the divergent needs of young people, mental health professionals, and PPIE leads. This process mirrored the aspirations of PPIE initiatives by cocreating a digital health research tool with key stakeholders.

Engaging nursing home residents in clinical research: insights from a patient advisory board, a patient advocate, and a study team.

BACKGROUND: Patient and Public Involvement (PPI) is increasingly recognized as an essential aspect of clinical research, particularly for ensuring relevancy and impact of research to those most affected. This study addresses the gap in involving older patients, particularly nursing home residents, in the research process by exploring motivations, expectations, and experiences of nursing home residents in Bremen, Germany, involved in PPI for developing a clinical trial on polypharmacy. METHODS: Two Patient Advisory Boards (PABs) were established in nursing homes as part of the INVOLVE-Clin project. A Patient Advocate (PA) facilitated communication between nursing home residents and researchers. A qualitative case study approach was employed, involving semi-structured interviews and group discussions with nursing home residents and researchers. Data was analyzed using structured qualitative content analysis. RESULTS: The study found varied motivations and expectations between nursing home residents and researchers. Nursing home residents valued the social interaction and the opportunity to voice their health concerns, while researchers aimed to incorporate patients' perspectives into study design. The PA was considered crucial in facilitating communication between nursing home residents and researchers. Challenges included the complexity of the study topic and the need for methodological adjustments to suit nursing home residents´ cognitive abilities. Generally, PAB participation was experienced to provide mental stimulation and increased confidence among nursing home residents in discussing their medication management. The PAB's influence led to the decision not to conduct a polypharmacy study. DISCUSSION: The findings underscore the importance of flexible approaches to PPI, particularly when involving older nursing home residents. Methodological adjustments, such as tailoring content and structure of PABs, and the inclusion of additional boards for diverse perspectives, are vital for effective involvement. The study also highlights the need for ongoing innovation in PPI methods to ensure meaningful engagement of older patients in clinical research. CONCLUSION: This study contributes essential insights into the practical implementation of PPI with nursing home residents, highlighting the need for patient-centric approaches that recognize their unique challenges and contributions. These findings are critical for shaping scientifically robust but also socially relevant and impactful research, especially in an aging society.

This study looked at how nursing home residents in two nursing homes in Bremen, Germany, feel about being part of health research. It focused on their reasons for joining, what they hoped to get out of it, and their experiences. The study used two groups, called Patient Advisory Boards (PABs), in these nursing homes. An important part of making this work was having someone called a Patient Advocate, who talked to the nursing home residents and communicated their perspectives to the research team. Researchers talked to the residents and other researchers through interviews and group discussions. The study found that nursing home residents and researchers had different reasons for being involved. The nursing home residents enjoyed the chance to talk with others and share their health worries, while the researchers wanted to make sure the study considered the views of older patients. There were some challenges for both, researchers and nursing home residents. The topic of the study, which was about using many different medicines (polypharmacy), was complex. Nursing home residents would need easier methods to take part. Nonetheless, being part of the PABs was experienced to be good by the nursing home residents. It helped them think more about their health and feel more confident talking about their medicines. The study shows that when including nursing home residents in health research, it's important to think about their specific needs to ensure meaningful engagement.

A community-centric model for conference co-creation: the world conference on CDG for patients, families and professionals.

BACKGROUND: Patient and public co-creation and involvement in health initiatives have been witnessing great expansion in recent years. From healthcare to research settings, collaborative approaches are becoming increasingly prevalent and diverse, especially in the field of rare diseases which faces complex challenges. Conference development and implementation, however, have been primarily guided by passive, information-sharing models. There is a need for conferences to evolve towards more inclusive, interactive, collaborative, and problem-solving platforms. Here, we aimed to report on a pioneer model, emphasizing a community partnership approach to conference co-creation that takes the World Conference on Congenital Glycosylation Disorders (CDG) as an exemplary case. METHODS: To answer the need to overcome the lack of access to high-quality information which limits CDG diagnosis, research and treatment options, the World CDG Organization has been refining a community-centric model for conference co-creation. Focusing on the 5th edition of the conference, data on stakeholders' preferences was collected using an online survey and a poll to define the conference agenda, guide its development and select optimal dates for an all-stakeholder inclusive, relevant and participatory event. RESULTS: We describe the complexities of the community-centric conference co-creation model, detailing its refined methodology and the outcomes achieved. The model is grounded on a participative approach to promote people-centered research and care for CDG patients. The involvement of the public in the conference co-creation and in participatory methods allowed the generation of knowledge on community needs and preferences. CONCLUSION: This paper describes a reliable, highly adaptable conference co-creation model that fosters community-building, disseminates understandable information, and serves as a borderless platform to incentivize multiple stakeholder collaborations towards CDG research and drug development. We argue this is a reproducible model that can be endorsed and more widely adopted by other disease communities and events.

In recent years, there has been a growing trend towards involving patients and the public in healthcare and research, transforming traditional conferences that follow a one-way information-sharing approach into inclusive and interactive platforms. This study presents a unique conference co-creation model established by the World Congenital Disorders of Glycosylation (CDG) Organization that emphasizes partnership with the community in its design and implementation. Besides involving the community in the planning phase, the model also uses other participatory methods. The 5th World Conference on CDG, held in 2021, serves as a prime example of this approach. The resulting community partnership model is shown to produce outcomes tailored to community needs, promoting people-centered research and care. This model is reproducible and easily adaptable by other disease communities and events to promote collaboration and problem-solving.